journaling in retrograde
January 8th, 2022
Sometimes you need to write out your thoughts so they stop taking up all your brain space. And I have scared thoughts that I would like to write so they no longer live in my head. But if I write them, they’ll be real and I don’t want that. Conundrum.
January 14th, 2022
I have dark, mean thoughts today. I acknowledge them. I don’t indulge them.
January 15th, 2022
Okay so, it is cancer. But it’s not like, CANCER-cancer, right?? Like the bad kind..? It’s the easy just-cut-it-out-and-you’re-fine kind?
January 17th, 2022
CT scans were today. Repeating this mantra while I do laundry obsessively: stage zero. Stage zero. Stage zero.
January 19th, 2022
“Do our best” is not a good plan, but it’s the only one we can muster.
I’m trying to think of a lighthearted way to explain what we’ve been going through today and all I can imagine is a TV static vortex with someone’s muffled screaming panning from ear to ear.
February 14th, 2022
It’s Valentine’s Day and I’m sad.. Only because I love you so much and I’m scared and I want to make you feel good,
as good as you make me feel,
And I can’t because I am broken somehow,
when I say things they just don’t stick,
and I want to make you feel as good and as valid as your friends do but I can’t not cry without saying it so instead I just don’t say anything…
I’m laying in bed alone and my head hurts and all I want is you.
When you were Sad in the Beforetime I could always make you feel better because I was outside and different and not even remotely close to the cause of your pain.
But now we’re married, tangled, and your pain is mine and I just cry your tears and secure the burden, tying it a little tighter
and I don’t know why I can’t help you
when the only thing I want to do is love you.
February 18th, 2022 (surgery day)
The living room is pink from the sunset (I’m grounded) and I am SO anxious to actually talk to him (I’m flying away).
This is a primal, human feeling. The urge, the call to care for someone you love. It’s fiery and assertive and anxious and I can’t answer it fast enough.
April 6th, 2022 (first chemo day)
It’s Chemo Day #1, 1/3. While I don’t think any of this is fair, it seems particularly cruel to slowly administer poison to someone over 3 days through a hole in their chest. “It’s discreet, you can do normal things, you wear it in a fanny pack!” It’s undoubtedly NOT normal.
May 2nd, 2022
New things: FB support groups, caregiver Zoom meditations, doing “yoga for cancer” with hubs in the living room every night (w/o mocking it), friends moving to Sweden forever in 8 days (bittersweet goodbyes), cherishing the good days between, and clumps of hair in the shower.
May 12th, 2022
Today was really hard. I’m not sure I’ll ever be able to scrub his sad, contorted expression out of my brain. He asked me to put it behind us. He is embarrassed. “Can’t we both be sad and still love each other?” I begged him.
I cleaned the kitchen spotless, trying not to cry. He fell asleep on the couch. I did yoga. Now I am pathetically trying to sleep on the couch with him, just completely jonesing for a crumb of affection. A cuddle. A squeeze. Literally anything to make it seem okay.
But it’s not okay because cancer just takes and takes and takes.
Tomorrow will be better so … I hope I can sleep.
Undated
He is screaming in his sleep, his disturbance undisturbed.
May 24th, 2022
He falls asleep early every night. His hands are changing, they look shriveled and tight like a mummy. His fingertips are turning gray. His stomach hurts all the time. He feels like he’s vibrating on the inside. 23 days until chemo is over.
PMS makes this worse for me. Most of the time I can deal. Grieve, process, heal, repeat. But today I just keep wanting to cry. I don’t want this for him. I don’t want this for anyone.
I can’t believe the cure for cancer is to kill a person just a little bit for long enough that it gives up. It’s bullshit. We need a better way.
June 13th, 2022
TIL candles are the best thing for chemo farts bc it will burn off the methane in the air.
Today I put candles everywhere.
June 14th, 2022
Full Moon in Sag and the End of Chemo Thoughts:
We play many roles in life. We cannot define ourselves as just one role (mom, daughter, wife) because it causes us to lose a sense of fullness and completeness. We are beautifully unique humans.
For me, this means I need to let go of the “caregiver” and “perfect wife” roles. I was clasping onto them so tightly (sure, out of necessity.. survival, even) that the rest of Me was falling away.
For a while, I was so depressed and scared that I felt paralyzed. Doing anything felt impossible but I found a tiny seed of motivation in the idea of using this experience to become a better Wife. I wanted to be a “pillar of strength” for my husband. I wanted to Do All The Things so he needn’t worry. I went all 1950’s Wife. Perfectly domestic and subservient. Serve your Husband, gladly. I imagined handling things with more grace, preempting his needs so nothing even needed to be asked. To make it as easy as possible for him to heal and rest and recover. That limiting mindset allowed both of us to survive the worst parts of chemo, but it’s completely unsustainable.
I have learned that it is not in my nature to be nurturing. I am not clean or orderly or exact. I am not a warm, mothering person. It doesn’t come to me easily. I can be a good caregiver when it’s obvious that he is unwell. But on the days where he starts to seem better I relax and have to remind myself over and over that he actually ISN’T better (he’s just handling it better).
But at the same time, I also learned that I am not as selfish as I thought I was. The last 5 months of my life haven’t been my own. I’ve dedicated all of it to caregiving, doing all the domestic and emotional labor, planning and preparing, etc and it’s gone really well. I packed our entire apartment, planned a move, set up our new home, worked 40 hours a week, got a promotion all while planning the logistics of his drs appointments and surgeries and treatments (with one car and a dog that can’t be alone), coordinating care, keeping up with chores and laundry, and tending to him physically, emotionally and spiritually. I don’t resent a minute of it. Not a moment. There is no bitterness there. The only emotion there is celebration – because I fucking did that.
June 15th, 2022
Chemo #6, day 1 of 3 is a go. 💗 So many emotions. I am making “chemo fried rice” while he is at the cancer clinic. I’m glad we figured out what food works best for him while he infuses but I really hope this is the last batch I ever make!
June 29th, 2022
I’d just like to document that things got super dark and scary and weird and both of us wanted to die (at different times and for different reasons .. sorta) and while I still don’t trust the badness is over, this is well deserved anyway and I feel like celebrating.
July 18th, 2022
14 hours until J gets his port removed. He’s getting de-ported. Last cancer surgery!!!!!
Margot Velvet 